Funeral/Party Details

Come and celebrate the life of Kelly King! 

There will be a service at Jericho Congregational Church starting at 2 PM (so as to leave time in the morning for Harvest Market clutter barn shopping). Mom wanted the funeral to be kid friendly, so it will be closed casket. Following the funeral we will walk and sing our way to the Jericho Center Cemetery.

A party will follow at our house (26 Saxon Ln, Jericho). The party will probably start around 4, but show up whenever. At around 6:00 PM we'll open the floor for you to tell your favorite story of Kelly, funny stories in particular. The party will end whenever everyone goes home. Please come for any or all parts of this. Of course Mom wanted to keep this a casual event.

Notes: Please bring a potluck item to share if you want to. Bring musical instruments if you’d like. Bring a lawn chair or picnic blanket to sit on. Please try to carpool to the party at our house, parking may be an issue.

Directions from Church to King's House: Drive away from cemetery back through Jericho Center and take your first left onto Plains Road (before the fire station and big downhill). Take Plains road 2.2 miles until the stop sign. Take a left onto Skunk Hollow Road for 0.8 miles. At the crest of the hill, just before the big row of pine trees take a right onto Saxon Lane. We are all the way at the end of the road.

Obituary

Kelly Brannagan King

October 25, 1960 -

September 17, 2017

Kelly Brannagan King, beloved long-time resident of Jericho, passed away on September 17th, 2017 after living with a brain tumor for about a year and a half.  She is survived by her husband of 32 years, Barry; her 4 children, Elizabeth, Sarah, Ben and Noah; her mother, Lucy Wilcox; 3 siblings, and countless family and community members.

Kelly was born in Burlington, VT in 1960 and grew up on Lafayette Drive in Jericho.

When Kelly was old enough for pre-school, her parents, along with Dee Dee Jamison and a number of other parents, started a co-operative nursery school.  It was called Saxon Hill School, and it is still going strong today.

As a teenager, Kelly was active in 4-H, and got a first taste of Jericho politics and community service when she and other youth joined in the effort to preserve the Old Mill.  At Mount Mansfield Union High School, she was involved in gymnastics, band and the musicals.  She met Barry King when she was in My Fair Lady and he was running lights for the show.  Their first date was the cast party, and the rest is history.  In July of 1985 Barry King and Kelly Brannagan were married in Jericho.

Kelly’s broad interests and enthusiasm for many topics led to a broad education at UVM, which included plans at various times for majors in engineering and sign language interpreting.  She eventually earned her teaching degree from UVM in 1988, and student taught with Delia Clark at Founders School in Essex.

Kelly and Barry's first child, Elizabeth was born that December, and Sarah was born about two years later.  When Ben was on the way in 1993, the family needed more room.  Kelly wanted her kids to grow up in her home town, so they moved from the wonderful Richmond community back to Jericho.  Ben and Noah were both born at their home on Saxon Lane.

As a mom of four,  her kids always came first, but she also made time to reach out.  She helped other new moms as a trained leader and counselor in La Leche League. She helped teach and organize the numerous homeschool co-ops that her kids were involved in.  When the kids transitioned from homeschooling to Mount Mansfield Union High School, she was a band parent and a chorus parent.  She served lasagna and ice cream on behalf of Academic Boosters, and cooked immense amounts of food for cross-country runners and Nordic skiers.  She continued to be a beloved "crockpot-mom" for Clarkson University Nordic race weekends, bringing food for Ben’s teammates, even after she was sick.

Kelly loved food and loved cooking (always in quantity, never lacking quality, and ideally along with other people).  She was known for soup and bread, tofu stuffing and reusable mugs (to not create unnecessary trash).

Kelly was raised in the Catholic Church, then Jericho United Methodist Church.  Her whole adult life, she was active in the Jericho Congregational Church.  When her kids were young, she taught Sunday school and helped in the nursery.  As her kids got older, she helped chaperone Youth Group and hosted high school bible study.  She served on the fellowship committee, helped with Chicken Pie supper, and was a long time member of the church choir.  When JCC's revered pastor, Peter Anderson, retired, Kelly was honored to serve on the church transition team and hiring committee that eventually brought David Coons here to pastor at Jericho.

Kelly loved choir, but also loved and encouraged music of all kinds, especially folk music.  She and Barry went to many contra dances, and carted kids to Suzuki violin lessons, flute lessons, voice lessons and Fiddleheads gigs.  She loved music parties and jam sessions where she was known for pulling out a pair of spoons or a mud bucket to add to the percussion section.  For many years, Kelly used her enthusiasm, energy and brainstorming skills to help organize and run the Champlain Valley Folk Festival.

When Noah went to high school, Kelly realized that she had worked her way out of her job as homeschool teacher.  "Miss Kelly" started putting her mommy skills to work as a part-time nanny for a few families in town.  She also stepped up to being market manager for the Jericho Farmers Market.  When she got too sick to coordinate all the logistics,  Elizabeth took over the job of manager and Kelly become honorary ‘hostess’.  Kelly loved running the farmers market because she got to promote community, sustainable food systems and farming.

Kelly not only loved promoting sustainability, but also loved practicing it on her own property.  She loved being outside gardening, setting up permaculture systems, finding wild edibles, and working on forestry and firewood.  Even when she could no longer get out into the woods on her own, she would direct work along the driveway clearing brush, collecting elderberry flowers and harvesting wild grape leaves.

Kelly was a force of positivity, selflessness, passion and good-will.  She always had a good idea (or twenty) and the optimism that any one of the ideas could be amazing.  She faded a bit as the brain tumor took over, which is almost a blessing.  To have full Kelly in this world and then have her suddenly gone would have been too much to bear.  

The funeral will be Saturday, September 23rd at 2 pm, at the Jericho Congregational Church in Jericho Center.  Interment will be immediately following at the Jericho Center Cemetery.  A potluck reception, celebration of her life, and time for sharing favorite Kelly stories will follow at her home. The party will begin around 4 pm at 26 Saxon Lane, Jericho, VT 05465.

In lieu of flowers, please make a donation to an organization which supports community and families.  We suggest La Leche League, NOFA VT, VPR, Water.org or VNA. We would love to have people bring wildflowers to the service if they have a chance to pick some that morning.

Party

It was a party all day yesterday and all day today.  Mom was sleeping peacefully, but the LNA said she could hear everything going on.  I sure hope so.  

Here are a few photos of the party that continued after mom passed away.  Yes, we were crying, but we were also laughing and hugging and eating.  Kelly always liked being among the chaos, and that's what she would have wanted.  After she passed away, the mourning intensified, but even then, you can't cry all evening.  There were moments of quiet, which were hard but necessary.  There were also moments of laughing about running out of kleenex (Kelly always was a big fan of toilet paper anyway), or laughing over stories of ,"the first time I met Kelly she was up in an apple tree...".  

The party continued after mom died, with her still laying there in the room.  It was nice to feel love and joy and happiness with her body there.  Those things are not forgetting her, but instead, a way to remember.    

There were hours and hours of time after she died to walk over to mom and give her a kiss.  Walk over and tell her I love her.  Walk over and tell her how sad I am that she will miss the rest of my life.  Walk over and tell her how her selflessness was so unassuming, so much a part of her, that I hardly realized it was there. 

It was hard to see the people from the funeral home come and take her body out of our house for the last time.  But it was only her body.  I am so thankful that she didn't have to leave the house and go anywhere else to die.  She died in our beautiful home full of people and love.

  

Mom and Dad

These two lovebirds met in high school and the rest is history.  Today we were recounting stories of mommy babysitting for daddy's little sister, their first date at the cast party of My Fair Lady, and the fact that when they first started dating, you only needed the last 4 digits of a number to call within Jericho.

I haven't known many relationships as intimately as I know theirs, but it was special.  There was so much selflessness between them, so much mutual admiration, so much gentleness and care and joy.

I really wanted to catch this picture of daddy looking at mommy.  He has always looked at her like that. All through my childhood he would look at her like this, and then kiss her in the kitchen (So embarrassing!  But even then I knew it was the best thing in the world).  Even when she was sickest and wasn't acting much like herself, in quiet moments, he would still look at her this way.  I actually got this pictures after she was gone.  Even without her there, you can tell he sees beauty and knows he is lucky to have had her.

They starting dating 40 years ago.  She is still his high school sweetheart, and the love on his face is so evident.

She's Gone

Grandma and Karen were about to leave.  And Chris and Reed were about to leave.  But I guess she wanted everyone here.  

Karen noticed she was "guppy breathing", only opening her mouth to take a breath.  I was on the other side of the room and dad called for Ben, and I knew that was it.  She took two more breaths, each about a minute apart, and she was done.

This was the first week she wasn't able to go to farmers market or church.  This was the first day she didn't eat anything.  

I can't stop crying, but I also can't stop smiling.  She led such a good life, and died surrounded by people who love her.  She was the best mommy ever.  She probably made mistakes, but I don't know what they might have been.

More to come soon....

Chocolate Fudge Frosting

Dads birthday was on Thursday.  It was farmers market day, and he had a meeting, so we had cake on Friday instead.  Elizabeth made chocolate fudge frosting, and poured a bit that wouldn't fit on the cake onto a plate . Later on Friday, I scraped off the extra fudge into a container.

As I scraped off the plate, I stopped putting the fudge in the container, and started putting it in my mouth.  Then,  I faced the question of when to stop scraping.  No matter how delicious it is, there comes a point where there just isn't enough left for it to be worth the effort to get off any more.

And I realized mom's life has come to that point.  No matter how good and delicious and beautiful this life is, there comes a point when it is no longer worth the effort to keep working harder and harder for less and less. All night, mom has been working hard at breathing.  But very soon it will be time to let go. And when she stops working so hard, it will be alright.

At some point, you run your spoon across one last time, get one more delicious (though at this point tiny) bite, and decide you've gotten all you can. But you got the pleasure of scraping and eating each delicious bite, and every bite was worth it. 

Peaceful

Kelly is feeling much more peaceful now.  See has been sleeping all day.  She has a pain pump, and when the VNA nurse came this evening, she said that mom isn't in pain.  Her breathing sounds labored, but the nurse assured us that if her face looks peaceful, she feels fine.

The nurse also told us that she is now in the "active dying" phase.   Kelly has hours to days before she dies.

Because mom has such a short time, we will probably keep her at home.   There is nothing they can do at respite house that we can't do here, and because her pain is under control and she is sleeping all the time, her care will actually be a bit easier now.   So, at this point it seems like mom will get her wish to die at home.  

Visitors

Visitors have been coming the last few weeks, but all of a sudden, everyone has been stopping by.  

We like a little chaos, and mom always has.  Here is the standard disclosure....

Please don't bring in little kids.  Miss Kelly isn't very responsive, and her pain medicine means she can't really focus her eyes, and we don't want to scare kids.  Someone stopped by with the kids in the car this morning and I went and sat in the car with them while the mom visited for a few minutes, and that worked well.

If you're coming for you, because you want to see Kelly, you are welcome to come.  We may kick you out after 5 minutes if it gets too crazy or mom needs some calm, so if you are coming from more than a few minutes away, please give a call first.

If you're coming for mom, to be honest, she isn't very aware of what is going on.  She probably won't know you're here, so don't come just for her.

If you are coming for us, we'd love to see you and give you a hug.  We have plenty of people around though, so if you are coming for us, but it's going to be inconvenient for you, don't worry about it.  Even if you don't show up, we know you love us and love Kelly.

We have lots of  apples and zucchini muffins, and we're keeping the coffee pot running, so you won't leave hungry!

Actual Hospice

In the last post I said hospice isn't necessarily that bad.  It's true that hospice doesn't have to be, but at this point it is.

Basically, since I wrote that post on Wednesday, mom has been in a lot more pain.  She has some pressure in her brain and has been very constipated, both of which are painful. She hasn't been talking much except to say "please, please, please" or "daddy, daddy, daddy" when she is in pain (because we call Barry "daddy", that's what she's been calling him lately too).  We got permission this morning to put mom on a lot more pain meds, and someone from the hospital pharmacy is dropping off a pain pump to one of the VNA nurses, and the nurse will bring it to us this evening.  People who don't even know us are going out of their way to help out.

The plan as of now is that she'll be moving to Respite House on Monday.  We are looking forward to having other people worrying about meds and transfers and keeping her comfortable, so we can just enjoy being with her.  

They have warned us that once they put her on enough meds to really make her comfortable, the part of her brain that is fighting may relax a bit.  In other words, there is a chance that she could die in the next few days.  As sad as it is, it is so hard to see her in pain.  The priority is keeping her comfortable, and if that means she isn't struggling and fighting to stay alive, that's okay.

Hospice at Home

Kelly had her last dose of chemo last Tuesday.  She, daddy, and the doctors decided that even the Avastin, which has been working since early on in her treatment, isn't doing much good any more.  The priority now is to reduce symptoms as much as possible.

Hospice is a scary word, because for many people, it means intense medications to reduce intense pain.  Thankfully, that isn't what it means for Kelly.  She is taking some pain medication, but "hospice" is just the term for when the job of the medical community shifts from treating the disease to treating the symptoms.  Much is continuing on in the same way it has been, but without the need to go to the hospital for infusion every few weeks.  The "hospice" designation also means that we have more support from the VNA.

VNA has been great. They have been working with us and making sure PT, OT and other services can come to the house.  They've been making sure we have all the equipment we need to care for mom in the best way possible.  They've also been coming to the house to help mom with bathing, teach us how to use equipment, and generally check in.

On Monday, one of the VNA nurses came to teach us how to administer insulin.  A week ago, mom's bloodwork showed that she has very high blood sugar.  This isn't too surprising, since high blood sugar is often a side effect of long-term high-dose steroids.  It also explains some of why she has been so sleepy recently.  We got a glucometer (the thing diabetics use to test their blood sugar levels), and some high readings over the weekend mean that mom is going to need to start taking insulin to regulate her blood sugar.

We are learning about many things we never wanted to know about; transfers (the fancy medical term for picking up and moving mom), dosages and side effects of various medications, the support available through the VNA.

We are also being reminded of many good things.  Noah and Elizabeth have so much patience when mom asks something for the 15th time.  Mom still calls dad handsome and can't wait for him to be home from work.  Ben gives really good hugs.  Our community is there to do a load of laundry, or drop by with a bag of apples.  Our extended family takes time to come visit, hold mom's hand and distract her with anecdotes and old family photos.

We're finding humor in the strangest places.  We're crying a lot.  We're hugging a lot.  We're taking turns being tired.  We're taking turns being strong.  We're taking turns being patient.

We're taking it a day at a time.

Best Intentions

Kelly always assumes best intentions.  She says it is why she and daddy have such a supportive and harmonious marriage.  It is how she chooses a response when something happens that could be offensive.  I can remember so many conversations where she has thought of all sorts of possibilities where thing could be just a misunderstanding or mistake, because clearly there wouldn't be malicious intent.  I have never learned how to navigate conflict with mom because there never was any.  She assumes best intentions and everything rolls off her back.



Kelly is selfless.  She has spent her entire adult life being a mother, and I don't know of a more selfless task.  Mothering is already a full time job, multiply by 4 and add on homeschooling, and I don't know if she has had a moment of "me time" in the last 28 years.  On top of that she has served her community by running the farmers' market, helping at church, nannying kids in town and so much more.




Kelly is unflaggingly positive and appreciative.  I suppose this is largely a symptom of assuming best intentions.  But it is also a symptom of noticing what is good.  The response to anything beautiful is to notice it, whether it is good food, or kind words, or lovely weather. The response to a problem is always, "Well, how will we move forward?"  Even in this whole process of dealing with brain cancer, mom has continued to look at the bright side (see Barry's post "Polyanna has a brain tumor").


The tumor doesn't have Kelly's beautiful spirit.  It sometimes assumes that if people can't make sense of her words, it's because they aren't trying.  It sometimes grabs at other peoples' food because it is worried she won't get any of her own.  It sometimes thinks that if we don't immediately do what it says it is because we don't love her.

But, we do love her so much.  And when the tumor says those things, we have to remember that it isn't her.  When she is talking, it is easy to know, because it is consistent with who she has been the last 57 years of her life.

"Thank you honey," "That foot rub feels so good,"  "That's beautiful," "I'm so glad you're here," "You take such good care of me,"  "This is delicious," "I love you".

Making Soup

Grandmas for ages have known that it is the best thing to do when things aren't going well.  Whether you have a cold or a broken heart, making soup somehow helps.  Depending on your heritage it may have been chicken, or beef, or matzo ball, or minestrone.  We come from the heritage of the Living Learning center at UVM in the 70's, so we make Pistou soup - beans and veggies with fresh pesto.  Last night was a night to make soup.

Mom got the results of her MRI yesterday, and they were not encouraging.  As we had suspected from her worsening symptoms, the tumor has grown.  This suggests that the experimental Kaytruda drug isn't working.  Going forward, mom's chemo regime will stop Kaytruda and only continue with Avastin, a chemo drug that has been successfully blocking blood flow to the tumor area.

Kaytruda was the "next thing" to try, and now there isn't a next thing.  That is scary.

This week has been hard.  The bright spot I keep coming back to is that we are doing this as a family. I have an ever growing appreciation for those people who are the sole caregiver for someone who is sick.  It can feel overwhelming to care for mom, but I am so thankful that we can give each other breaks, and hugs and words of encouragement.  Thanks to all of you for being part of the extended family of relatives, church family, community members and friends who are sharing this load.  We love and appreciate all of you!

MRI

We're at the hospital for an MRI.   The doctor moved up the date a bit so we can see how the tumor is responding to the current treatment protocol.   Dr.  Thomas was expecting that the Kaytruda would be working by this point; the "worse before it gets better" would be over, and each treatment would be causing improvement.  Unfortunately,  that isn't what we're seeing.  

Instead, we're continuing to see decreasing function.  The aphasia (difficulty speaking and finding words) seems to be a bit worse.  Mom is also needing more help to move in and out of her wheelchair.

Although we are doing the scan today,  we won't know anything about the results until we meet with the doctor on Tuesday.  After that we'll have a bit more information and we'll know whether or not we are continuing with the Kaytruda.  Although we are anxious about this MRI,  we are looking forward to having more information so we can make the best decision about what to do next.

The Flying Wheelchair

As I said in the last post, Kaytruda is working, but it is causing a lot of mobility issues.  Kelly can't do stairs or walk independently, so we have been making some adjustments to accommodate those things.  However, we've been blessed with some technology that has made life much easier!

Just as stairs were starting to get hard, someone from church came over, and realized that a ramp would make it easier for mom to get into the house.  The next weekend, while mom and dad were at Dana Farber for an appointment, a team of people showed up with lumber, tools and willing hands.  By late afternoon, we had a beautiful ramp, which helped mom walk up to the house, and a few weeks later, for the wheelchair.



As walking has been getting harder, she has needed to start using a wheelchair more.  We've been gifted with a series of wheelchairs, first from the Casillis, then from the Greeleys, then from some neighbors.  This most recent wheelchair is a red motorized wheelchair. She loves how easy it makes it for her to move around the house, go down the driveway, or roll around the farmer's market.  Noah created a (sort of) portable ramp so we can roll the (very heavy) chair into his car in case mom needs to roll around somewhere other than home.  However, we keep reminding her to turn down the speed and watch where she is going.... it has inspired me to relearn the fiddle tune "The Flying Wheelchair" (the tune starts at 1:30 on the video).

We've also been gifted with a hospital bed that our neighbors posted on front porch forum just days before we made the decision that doing the stairs in the evening was getting too hard.  Daddy has been sleeping downstairs on the couch so that he can be nearby at night in case mom needs anything.

Having everyone home has been a help too.  Elizabeth is still holding down the fort, but is able to have a bit more backup now that Noah is home from England and I (Sarah) am off from teaching for the summer.  With more of us around, we are able to always have someone with mom to make sure she is able to safely move in and out of her wheelchair when she needs to.

It has been hard to adjust to all of the changes, but between the new equipment and the extra people, we are figuring out how to help mom keep doing all the things she loves to do.

Kaytruda

It seems that Kaytruda (the experimental drug we talked about in the last post) is working!  Kelly had a brain scan on Monday, and today she had an appointment with her doctor to find out the results. The tumor seems to be about the same size, or even a bit smaller.  We had been seeing some of the negative short term effects of Kaytruda, so it is great to know that they long term effects are exactly what we were hoping for.

Since she started Kaytruda, Kelly has been having a harder time moving around. When Kaytruda is working, it often causes "pseudoprogression", in other words, it makes it seem like the tumor is getting worse, even if it isn't.  In fact, it is just the Kaytruda doing its job of attacking the tumor.  This positive brain scan confirms that "pseudoprogression" is why Kelly has been having a harder time with mobility.

Last month, Kelly's mobility was bad enough that she and the doctors decided to skip a dosage of Kaytruda until this scan, just to make sure it was working before we continued.  Since it is working, she went right from her doctor's appointment this morning to the infusion lab, where they gave her the next dose of Kaytruda this afternoon.

Of course, if you've been at the hospital most of the day getting good news and getting treatments, it's important to get a little snack before you go home... and the hospital has delicious tiramisu!

Treatment Update

Kelly is still doing well, but the last scan showed some tumor growth.  We promised that no news was good news, so we realized it was time to update all of you and let you know.  To some extent, this was expected.  The plan of action all along has been that we will use a given treatment until it is no longer effective, and then try the next thing.

The next thing sounds like it may be a chemo drug that specifically works with Kelly's immune system to attack the cancer.  This is a fairly new treatment that hasn't yet been used on large numbers of people.  So, if this ends up being the best option for her, it will be overseen by Dana-Farber in Boston.  The bad news is that because it is an experimental drug, insurance wasn't going to pay for it.  However, the good news is that we just got word today that even if she doesn't get into the study, the company testing the drug will still sponsor the treatment.  Basically, even if she isn't in the official study, they still want as much anecdotal evidence as possible of this drug's effectiveness, and we are all hoping that mom can be one of their success stories!

Kelly and Barry will be headed to Dana-Farber in the next few weeks to get more details about this treatment and have mom undergo initial screening to see if she can be part of the official study.

In the mean time, life is chugging along as usual.  Between chemo and other medications, mom is napping a lot, but has been finding that getting outside still gives her a lot of energy, so she has been doing that as much as possible.  The PT has been telling her that being active and doing as much as she can is really the best physical therapy, so she is working hard to stay active and keep strength and dexterity in both her hands.  Barry is keeping busy with engineering projects at work and at home, and of course being a huge support for mom, whether it is taking her out to dinner or going with her to appointments.  Elizabeth is the daytime chauffeur and medication manager.  She has also been taking over some of the paperwork aspects of farmer's market and is treating us all to her excellent cooking.  I'm enjoying living at home again, but the family keeps saying they can't remember what my face looks like because between teaching in Richford, dancing a lot, and fiddling, I'm hardly ever home.  Ben is also at home and has almost completed his first full year working at Engelberth Construction.  Last weekend he felled some trees in our woods, and this weekend he is in Potsdam visiting the lovely Melanie Cockrell.  Noah is studying abroad in London (along with the lovely Aliza Kenney), and right now they are on a weekend trip to Dublin.

It is discouraging to see that the tumor has resumed its growth, but we are hopeful that this new drug will be effective.  We are so thankful that this drug is under development and available for Kelly.  Look for more updates as we get more information and details about what next steps will look like.